[karilann]

I still think Tecfidera will be a welcome new drug for some people. I have 2 pharmacist friends who really like the drug and are happy it has hit the market.

Remember the PML was in 1 or 2 cases over a 30 year span treating psoriasis. Tasabri is very much liked by many MSers, but it has a risk with it also.

For those who can not take the interferons, this may be their answer.
I felt much more energetic while on the Tecfidera and shortly after stopping it. Now I am feeling a bit crappy again and will be starting Avonex tomorrow. I still believe the Tecfidera perked me up a bit.

All these drugs are scary because it is a crap shoot as stated. Its a very personal decision between the patient and doctor on what to try.
I did fine on the interferon for 11 years but was very sick and tired of the shots and my skin was so sore all the time. So I tried the Tecfidera and I think if they would titrate it up more slowly, maybe I could have tolerated it. Not sure....will never know....but I'm glad I gave it a go.
I guess only time will tell how the general MS population really does on the Tecfidera.
For me personally, I am not ready to dismiss the medication. All medication carry risks. You have to be your own advacate.

Wish me luck with the Avonex!

[SallyC]

I'm stepping in here to say....yes it is your final choice to take or
not to take these scarry poisonous drugs. But I can't help thinking
that they are given and prescribed, in a willy nilly manner, giving
no thought to type of MS you may have, your size, your weight,
your DNA, family history....or anything.

They prescribe the same amount for a 5'2" 120 lb woman as they
do for a 6'5" 220 lb man. Oh yeah, some are just now realizing,
how WRONG that is. But do they stop and sort it out...Noooo,
because that would interrupt their profit.

Just saying again, use your own sense of well being,
not someone else's.

[goldie]

I really wanted this to work for me.

It took so much work to get: The delays getting to market, the fights with the insurance company, the astronomical cost.

At first the side effects were rough, but my body got used to it and now I mostly just get hot and flush a bit, no big deal.

Except - weight gain! Is anybody else gaining weight???

But sadly, it's not helping, and I think it is hurting. I have been getting more exacerbations than usual, but didn't want to believe it was from the Tecfidera. Unfortunately, I am now experiencing one of the scariest flare-ups I have had in a long time.

Anybody else experiencing this?

Guess I will have to stop.
I really, really wanted this to help and it seems I have wasted thousands of dollars just to get sicker.

[Kitty]

I'm sorry it didn't work for you, Goldie. Seems like more and more folks are coming forward with issues from it.

I just want something that works without me having to take umpteen other meds to counteract the symptoms from it.

I'm thinking I want (and need) to go back on LDN. The only reason I quit was that I had surgery and had to go off of it prior to and during the surgery. Time to call Dr. S again.

[Kitty]

Looks like it's been approved in Australia.

http://www.msra.org.au/new-oral-ms-drug-approved-tga

[SallyC]

Has anyone heard from Eddie? He must be pretty discouraged by now.
Darn poison MS Meds..

[Sparky10]

Two and a half months for me, no problems. Not what I call problems, anyway. Yesterday, after two beers, I got the flushing effect. Suddenly felt like sunburn and turned red, even my arms. It went away quickly. And I recently read someone describe how their leg(s?) would unexpectedly weaken. Mine do that with a twinge of pain, but I cannot remember if it started before Tecfidera or after.

[My3sons]

Starting my 2nd month and no problems so far. I always make sure I have ibuprofen before or with and take it with a glass of milk. I do feel like my Ampyra isn't as effective but that could just be this darn HOT temps. I sure don't miss the shots.

[dmplaura]

Originally Posted by SallyC

Has anyone heard from Eddie? He must be pretty discouraged by now.
Darn poison MS Meds..

I've been away a while as well (not on anything currently - just my regular Nabilone and Clonazepam for pains). I'm wondering too how Eddie's doing. Thank you all for your feedback on this medication. I came here to update myself on the world of pharmas and drugs, so it's nice to see and read first-hand accounts of medications, side effects, positive benefits.

Hope everyone's doing well!

[SallyC]

Howdy Laura. Nice to hear from you..